In a Time Warp Since 18

Member Stories
#1

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)? United States

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?) Google

What is your current age, height, weight? 21, 6’1”, 165

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)? Finasteride

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1 mg/day

What condition was being treated with the drug? Hair loss (very minimal)

For how long did you take the drug (weeks/months/years)? Around three months. My memory is so addled I can’t really remember.

Date when you started the drug? September 2020

Date when you quit the drug? December 2020

Age when you quit? 19

How did you quit (cold turkey or taper off)? Cold turkey

How long into your usage did you notice the onset of side effects? I’m not exactly sure.

What side effects did you experience that have yet to resolve since discontinuation? All of them.

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[x ] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[x ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[x ] Watery Ejaculate
[x ] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[x ] Reduced Sperm Count / Motility

Mental
[x ] Emotional Blunting / Emotionally Flat
[x ] Difficulty Focusing / Concentrating
[x ] Confusion
[x ] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x ] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[x ] Severe Depression / Melancholy
[x ] Suicidal Thoughts

Physical
[x ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[x ] Testicular Shrinkage / Loss of Fullness
[x ] Genital numbness / sensitivity decrease
[x ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[x ] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? A ton of supplements.

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?

Anything not listed in the above questions you’d like to share about your experience?

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

I started fin nearly two months into my freshman year at college due to a small amount of hair loss that I was, unfortunately, consumed with. Sometime during my course on it I noticed that I had zero libido, so I stopped taking it. I had all of my listed side effects then, but I did not connect them to fin at the time. Nothing has improved in my two year journey with this. The extent of my memory loss seems greater than most; I’ve forgotten the meaning of some words and what seems like most of my life memories. I must say I envy those of you who got to start your career or finish college before being encumbered with Merck’s excesses. My career path and education are irreversibly damaged. I’ve come to enjoy the derealization because it protects me from reacting to this.

I posted my story a few weeks ago but it got lost in the bug fix.

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#2

Hey there @TheGeneral,

Sorry about the technical difficulties. Good to have you checking in with us again!

Just awful to hear you’ve been going through this. It remains baffling that drugs with such devastating potential are still given to young people over a cosmetic issue. I hope that with time your symptoms will still see some improvements at least. Please take good care of yourself in every way available to you.

On a more positive note, there are a few things you can do to contribute if you haven’t done so yet.
Don’t forget to report your ongoing side effects to your local pharmacovigilance agency if you haven’t done so yet.
You can also stay up to date with ongoing efforts by subscribing to the PFSN newsletter.

Welcome to the forum.

2 Likes
#3

I just had my first panic attack from this condition, after two years. It lasted around ten minutes. I have no clue what brought it on.

#4

I’ve been there. About a year ago I was just sitting in my living room playing a nostalgic video game. I was 100% in my comfort zone when out of nowhere I get this severe panic attack. I had zero reasons to be stressed at the time, it came completely out of the blue. I could barely sleep that night.

There is no way that I believe that this anxiety attack was brought on by anything I was thinking about at the time, as far as I can tell it was entirely unprovoked. I absolutely associate that event with having something to do with this.

But yeah, it was a moment that passed and how on earth am I ever going to prove any of it to anyone, you know?

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#5

It’s quite odd, indeed. I’ve noticed that a lot of my symptoms don’t really follow any pattern.

And not being able to prove what we experience sort of brings up the nature of qualia, which is an interesting philosophical concept if you like that sort of thing.

#6

For the clinical record: At the behest of my parents, I recently had an EEG done at a university hospital. I received a phone call afterward and was told the results were “normal.” Needless to say, an EEG is not an accurate identifier of cognitive impairment stemming from PFS. I expected as much from reading through older threads.

#7

What was the motivation for EEG? I mean, did they look for anything specific? And have you had MRIs as well?

#8

I’m not sure. I think the neurologist doesn’t think most of my issues are from fin (of course) and was speculating that I might be having seizures throughout the day (I’m not). I had an MRI done before I found out I had PFS and it was also “normal.”

#9

Exactly what I expected. I also had an MRI and it was normal according to my neurologist. Although the frigging numbness makes me wonder if the nerves are really OK.

#10

Update, for myself: I just had my third Christmas with this disease, and it seems to have coincided with something sinister. The past three weeks or so had been quite marvelous: the head pressure I experience went away, my thoughts were very rational, and I felt a strong sense of peace about this condition. Some of my memory loss even reversed, as I was able to recall events from the past and words that I had seemingly forgotten (this was remarkable and bodes very well for my life after a therapeutic). On the morning of Christmas Eve, I even felt my sense of self return for around thirty minutes.

During this time I was optimistic about the future, looking forward to the next few years and thinking about what I will do when I get out of this. I messaged one of my old friends about catching up, took my nephew to a few places, and bought a book or two. I also remember coming on here a week or so ago and not being able to comprehend the mental state I was in when I authored some of my previous posts.

Unfortunately, this disease was not to be outdone. Late Christmas night, the head pressure returned and with it plenty of irrational thoughts to boot. I rushed to my bed, desperately hoping I would wake up with it gone, for its alleviation had been the signature of my recent betterment.

My hopes did not materialize. Instead, I was awoken the next morning by a painful orgasm from a wet dream (I hate discussing sexual issues here or elsewhere, but I have never experienced a painful orgasm). As the day went on, I noticed a sharp reduction in the number of thoughts I have (I can go minutes at a time without one if I try). The head pressure has returned, this time giving me the sensation that there’s a golf ball stuck in my hippocampal area. My mental processing seems a little delayed; trying to keep up in conversations and put together sentences requires effort. I’m sure my memory recall is affected as well, which is particularly worrisome because I will be resuming college in a few weeks (the disappearance of my thoughts is deeply troubling on that point too).

I’ve entertained the idea that something I ate on Christmas could have caused this, but there’s no way for me to know and I tend shy away from suggestions of that kind as they seem pretty nutty. Above all, I truly hate not being able to know how I will be from one set of hours to the next, and I hate not being able to reach stability at a decent level of functionality. I harbor no unrealistic expectations about improvement without further scientific advancement, but I have had periods prior to this recent turn of events where I felt I could see this through until the end with relative ease if I could just stay at that level. I try to remind myself that a) my personality and most of my memories are probably still here some place and b) if things have changed for the better before of course they can again, but it just seems like it’s a whole lot easier for things to worsen than to improve. Hopefully I will soon be able to read this and not comprehend what led me to write it.

I was going to drop this in a folder on my computer but decided to put it here with everything else.

#11

this right here. hang in there man. I think a lot of us can relate to the ups and downs of this condition. Those of us with ups can count ourselves luckier. but it’s hardly a consolation.

I experience the same seesawing. It’s frustrating. And in the downswings I find it impossible to remind myself that things can get better. but eventually they do and I get a little reprieve.

I hope some improvements are around the corner for you, and I look forward to us all being on the other side of this eventually.

2 Likes
#12

Thank you @loops. I wish you stable improvements as well

#13

Things are getting very bad. Would update my original post to add more symptoms, but I no longer can as it’s a few months old now.

I’ve gained tinnitus, which I actually picked up in early December or so, but now it’s either much louder or I am much more aware of it. Symptoms that I previously didn’t think had room to get worse somehow have, namely derealization, anhedonia, memory function (encoding & retrieval), concentration, and low number of thoughts (gained a few weeks ago). My new memory and concentration (dis)abilities often times find me sitting in different places in my house unsure of how I got there or what I’m doing. I also feel weightless, and everything I pick up feels weightless. Things like typing or brushing my teeth are difficult to coordinate now due to my terrible concentration and how weightless things are. My dad is staying at my apartment and taking me to my classes, and it’s all I can do after they’re over to remember to call him and then pick up my phone and coordinate doing it.

And most troubling: My inner monologue has left almost entirely; I can barely hear it. I feel completely absent, nearly braindead, like I’m walking around in a coma. My default state is just staring at the ceiling with nothing going on at the conscious level in my brain. The thinking and speaking I still manage to do are much slower. Reading doesn’t really trigger thoughts anymore. All my preferences have faded away; I’m ambivalent toward nearly everything. I see my parents and other relatives with complete objectivity, like I’m entirely detached from them. Previously, there was not much of a difference in how things I’m looking at made me feel, but now there’s not even much of a difference in how I perceive/conceptualize them. Everything seems like part of one large visual landscape with no points of differentiation meaning wise. Up until this set in it was like someone hit the ‘dysfunction’ switch on my brain, but now it’s like the ‘off’ switch has been pressed.

The only things I have done in the past few weeks out of the ordinary are have alcohol on New Year’s Eve and take a few ibuprofen for pain. I should mention I was given escitalopram from March 2022 to July 2022, before I had read the literature review or come across this forum. After stopping it I had typical withdrawal symptoms which went away after several weeks, so I thought I was out of the woods on that, but that assessment is starting to look suspect.

Sorry this is turning into a saga. I’ve never been a dramatic person, but I’m getting quite worried that I’m going to be stuck in this new state. I desperately hope I can get back to how I’ve been throughout the vast majority of my time with this disease. I’ve had to drop down to part time at college because of these new developments, and to be frank, I’ll probably have to drop out if they don’t change back. The previous sentence is quite horrifying: I’ve already lowered my expectations so much, but now I see them slipping away entirely. It’s impossible trying to match up the person I am now with the person I was before and unfathomable that I’m completely numb to it all. It’s so criminal that I’m sitting here with a front row seat to my demise, strapped in and unable to alter it. I remember thinking a few weeks ago that there really is no lower limit on how bad things can get. I didn’t expect to be proven right so quickly.

Not looking for anything, just documenting.

#14

I am suffering from tinnitus as well like u. You should go and see a dentist as you might have tmj/tmd which is impacting tinnitus. It sounds like a lot of your mental symptoms are worsening because of the tinnitus specifically

#15

New, additional symptoms: bone pains (on occasion), chest pain/tightness (on occasion), cold hands and feet (on occasion), shortness of breath (on occasion; usually occurs with random spike in heart rate), dry hair, whole body numbness, muscle wastage (my left butt cheek and ball of my left foot; can occasionally make sitting uncomfortable), fatigue (localized to muscles or groups of muscles; usually in arm or neck), visual snow (thickness varies), hyperacusis (sounds are always too loud, occasionally cause panic), pressurized sensation in ear (on occasion), brain shocks (on occasion in evenings; usually from screens or objects in periphery), issues with depth perception, issues with auditory spatial perception (it’s not completely gone but very imprecise), increased ambivalence/apathy (extreme), increased derealization (my dog, objects in my room seem unfamiliar), issues accessing mental representations, and continued worsening of general cognition and memory.

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